6-year-old Gaston boy tells Congress what living with diabetes is like

Wednesday

Aug 2, 2017 at 4:41 PMAug 2, 2017 at 4:42 PM

Eric Wildstein Gazette staff TheGazetteEric

He played a frenzied round of Hungry Hungry Hippos in a U.S. congressman’s office.

Manning the orange hippo, 6-year-old Miles Bone chomped down a bevy of rolling white marbles in U.S. Sen. Thom Tillis’ Washington, D.C., office last week alongside other children like him living with Type 1 diabetes. Tillis wasn’t able to join them, as he had obligations on the Senate floor to discuss the nation’s controversial health care reform bill.

But Miles, who lives in Dallas with his parents and older brother, and the other children were visiting Capitol Hill to advocate for their own health care needs. They were part of a delegation of about 160 children from each U.S. state and several countries representing the Juvenile Diabetes Research Foundation 2017 Children’s Congress. The bi-annual event brings together celebrities and children living with Type 1 diabetes to stand before Congress to advocate for research toward a cure.

For Miles, who celebrated his birthday in Washington, D.C., on Saturday, it was the experience of a lifetime.

“To get close to so many kids that live just as Miles does with Type 1 (diabetes) and to cheer them on as they advocated in front of Congress, it just was a really emotional experience,” said Sara Bone, Miles’ mother. “It was really empowering to be there and feel like you were making a difference.”

Type 1 diabetes, also known as juvenile diabetes, is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone people need to get energy from food. Children and adults can be diagnosed suddenly at any age. It cannot be prevented and there is no cure.

Miles was diagnosed when he was just a year old. He wears in insulin pump basically 24/7 which injects him with the proper dosage of insulin through a tube attached to his arm to regulate his blood sugar. He must prick his finger with a needle to test his blood sugar levels several times a day and counts his carbohydrates to determine the proper amount of insulin he needs.

Miles applied earlier this year and was accepted to be a part of the Children’s Congress. The delegation in the nation’s capital included celebrities living with Type 1 diabetes such as Paul Sparks, actor and star of Netflix’s “House of Cards,” NHL hockey player Max Domi, IndyCar driver Charlie Kimball, CNN correspondent Cristina Alesci, and more.

Miles joined the delegation as they advocated for diabetes research during a special Senate hearing with Senate Diabetes Caucus Chairwoman Sen. Susan Collins, of Maine, Sen. Bob Casey, of Pennsylvania and other members of the U.S. Senate. The committee heard testimony from Sparks, Dr. Griffin Rodgers, director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health, along with several children living with Type 1 diabetes and their parents.

Diabetes reared its unpredictability for Miles during the hearing, when his blood sugar suddenly dropped dangerously below its proper levels. But Miles’ mother and other parents acted quickly to get him some glucose and he was OK.

The children also had the chance to speak with each of the celebrities who were on-hand.

“I loved for Miles to get to see all of those professional athletes that are able to manage their diabetes while playing the highest level of sports,” said Sara Bone.

Miles later visited the offices of Tillis, North Carolina Sen. Richard Burr and U.S. Rep. Patrick McHenry, who serves the 10th District of North Carolina in the U.S. House of Representatives. Miles showed McHenry a scrapbook he made about his life since his diagnosis with Type 1 diabetes. They talked about state parks and the need for continued funding for research projects such as the Special Diabetes Program, which provides $150 million annually for Type 1 diabetes research at the National Institutes of Health.

"I really enjoyed meeting with Miles and his mother and learning about his experience living with Type 1 diabetes,” said McHenry. “Miles has a great attitude and it's encouraging to see his commitment to advocacy work with JDRF beginning at such a young age."

Miles celebrated his birthday with a delicious milk shake before he and his family headed back to Gaston County. He will attend kindergarten at the new Gifted and Talented Academy at Pleasant Ridge Elementary school this year. The school will have a full-time nurse on-staff who will be able to tend to Miles’ medical needs.

Though Miles was one of the youngest members of the Children’s Congress, he recognizes the importance his advocacy served.

“When we walked out of our last meeting he said ‘Mom, I can’t believe that I just did that,’” said Sara Bone. “He said ‘I can’t believe I told them my story.’”

You can reach Eric Wildstein at 704-869-1828 or Twitter.com/TheGazetteEric.

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